NEWPORT BEACH, Calif., April 6, 2021 /PRNewswire/ — The volatility of the previous yr has created extra pressure on households grappling with Duchenne muscular dystrophy, a extreme X-linked type of muscular dystrophy that impacts roughly 1 in 3,500 to five,000 males born annually. Misinformation, cyber bullying and undesirable information assortment on different social platforms added to the explanations for enhancing DuchenneXchange.org.
The DuchenneXchange is a devoted platform for the Duchenne neighborhood to be taught, pay attention, join and discover. All Duchenne stakeholders, together with sufferers, households, organizations, scientists, advocates, well being care professionals, and pharmaceutical firms, are invited to take part. On this collaborative, inclusive setting, your complete Duchenne neighborhood can share credible assets and knowledge in addition to get the help they want from prognosis to medical trials and remedy. With an improved infrastructure and performance sponsored by CureDuchenne, a number one nationwide nonprofit, the DuchenneXchange is now poised to higher obtain its neighborhood targets of service and collaborative engagement.
“When a household is attempting to grasp a uncommon illness and guarantee they’re doing all the things to offer the perfect remedy for his or her little one, social networks could be a minefield of misinformation and even cyber bullying,” stated Josh Argall, senior supervisor of DuchenneXchange. “The DuchenneXchange gives a secure setting of sympathetic and educated contributors moderated by clinicians and consultants on the uncommon illness.”
A major side of the brand new DuchenneXchange is that it is constructed for each desktop looking and a cell app that may be downloaded within the iOS App Retailer or Google Play. Now, customers can entry and interact with a variety of individuals, content material, occasions, and updates from throughout the uncommon illness neighborhood on any gadget, at any time. This allows members to take full benefit of the enhancements to the DuchenneXchange, together with:
- Members can join with one another in a safe and trusted setting, with out the worry of bullying, irrelevant advertisements or different privateness issues.
- Teams now characteristic extra alternatives for social networking inside the website and engagement with one another, plus new maps and profile search instruments allow the Duchenne neighborhood to interact with close by members who share related pursuits.
- Customers can write a weblog, be famous because the creator and share their ideas all through the Duchenne neighborhood, providing a wider vary of views and experiences.
- Up to date survey and ballot capabilities empower members to take a extra energetic function sharing their insights and ideas with the neighborhood.
- Actual-time information retains customers knowledgeable on related Duchenne info, medical trials and research progress.
- A medical trial finder that is searchable and up to date day by day helps the neighborhood keep abreast of next-generation therapies in growth and discover accessible medical trials to take part in.
- The useful resource directories characteristic each clinics and clinicians so the neighborhood can simply discover close by suppliers and handy areas.
“We observed an amazing want for a platform that may be personal to our neighborhood,” stated Debra Miller, founder and CEO of CureDuchenne. “The wants of the neighborhood are at all times initially in our applications. Because the infrastructure sponsor, our help of the DuchenneXchange builds on this and gives a spot the place the neighborhood can come collectively with out worry of politicized, misinformed or incorrect feedback. The DuchenneXchange is actually a spot for the Duchenne neighborhood to return collectively.”
The neighborhood is invited to find out about the advantages and options of the DuchenneXchange by visiting DuchenneXchange.org or downloading the DuchenneXchange app from the Apple App Store or Google Play Store.
Constructed by the Duchenne neighborhood for the Duchenne neighborhood, the DuchenneXchange is a collaborative, inclusive setting the place your complete Duchenne neighborhood can share complete, secure, credible assets and knowledge in addition to get the help they want from prognosis to remedy to medical trials. The complete Duchenne neighborhood is invited to hitch, together with sufferers, households, organizations, scientists, advocates, well being care professionals, and pharmaceutical firms.